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I was diagnosed in January 2013, so it's a learning experience for me and my family. Hubby has been pretty good at helping me stay gluten-free, a few hiccups but we're getting there.

Went visiting my parents today. My mom is always asking me what I can't eat. My toddler niece offered me a cookie and my mom says, "No, Auntie can't eat that. She'll get sick." So my mom is getting it. She was even asking how she can make me my carrot cake for my birthday!

Then, my dad was asking me more about it....celiac disease, food, symptoms, how long must I have had it before getting tested, if I've gotten sick since "not eating wheat", what all has gluten in it, what gluten is... He gets up, goes into the kitchen and starts reading labels. "Son of a gun, it must be hard, There's so much you can't eat."

It feels good that they want to learn more about celiac disease and are doing their part and aren't just rolling their eyes because it can't be that bad, sort of thing. They know how ill I was before going gluten-free and are happy that I'm visiting more (was almost reclusive before dx because I felt so unwell and could hardly walk)

Both my parents have bad digestive problems, and I'm convinced my mom has undiagnosed celiac (quite a few symptoms), but refuses to get tested. My dad's thinking about it. Wonder if both my parents have celiac disease....double whammy for me

When I went to my new doctor about being tested for celiac disease, I was informed that OHIP doesn't cover the cost of the celiac panel blood work. I didn't care because as far as I was concerned, it was worth it. I tested positive. It's still worth the $125.00 it cost. ( Several years ago, when I first brought the idea of me having celiac disease up to my doctor, he said no because I wasn't wasting away. So I trusted this "diagnosis" and continued to have health issues until my health deteriorated drastically last year.)

HOWEVER, it got me thinking. Isn't it better for OHIP to cover this cost than to keep covering costs for related medical issues of those who remain undiagnosed? If I add up all the times I went to the doctor for gastrointestinal issues, severe unexplained body/joint pain, depression, general unwellness, body rashes, miscarriages (possibly related to celiac disease) over the years and the operation to remove my gallbladder , not to mention the prescriptions (sometimes paid by insurance companies if you're lucky to have a plan), it must be in the high hundreds if not thousands. And had I not been diagnosed, I would have continued to make medical trips for some of the prementioned and possibly new symptoms!

I believe that Ontario is the only province in Canada that doesn't cover the cost.

In the past year, my health deterioriated so bad and I had no energy to do anything and my joints ached profusely. My parents and siblings always made comments about me not coming around to visit, or being angry with me because I wasn't spending more time with my young niece. I got the sarcastic barbs about making excuses, being antisocial, lazy.

But now, since my dx, they all seem to want to understand, saying they didn't realize I was so sick. I think explaining everything to them and answering their questions makes a world of difference. When I got my diagnosis, I wanted to say "HA, see I told you I was sick!"

Maybe giving some reading material on the health issues that undiagnosed celiac disease and not being gluten-free can lead to can help people understand? Or even let people read about the symptoms of celiac disease, as these can be very debilitating. I think people have to be made aware that being gluten-free because of celiac disease is not a lifestyle choice, it's a medical necessity.

As for the endoscopy, that can be beneficial. I have been diagnosed celiac disease without the endo/biopsy BUT I do have an endo scheduled for June (the joys of living in rural Canada!). My doctor wants to check on villi damage but moreso for other possible damage caused by reflux and other digestive problems. So for other possible issues, yes, it can be a good thing to have.

Keep on making discoveries and conquering them! Get well, and stay well.

Diana

Thank you so much! It really is a journey of discovery. I look forward to full swing gluten-free because to actually start feeling good, wow! I know how good I felt in the one month gluten-free, and then how awful I felt during the gluten challenge. Day 2 of being gluten-free again.... nice to not have a bloated belly!

I'm so glad you figured out what was wrong! Good for you! I hope you continue to feel better on the gluten-free diet.

BTW, are you in Alberta? It takes forever and a day to see a specialist here.

Thank you!!

No I'm in Northern Ontario. I'll have to travel 600 km round trip for the Specialist. But it's all worth it. I think I've just out of the blue shed tears of relief since hearing about the positive results. And try as you might, you cannot get anyone to understand what you are actually feeling, unless they've experienced it themselves. Hubby was getting frustrated because I couldn't do anything, wasn't contributing to household chores, family peeved because I never visit and was always too "lazy" to go out. And this forum is fantastic!

Living in the United Kingdom from 2000-2008:In 2001 and 2002, I had miscarriages (one at 12 weeks and one at 6 weeks) then unable to get pregnant afterwards.

At 40 years old, was perimenopausal (my first menstruation started 2 months after my 11th birthday)

In 2005, my gallbladder was removed with one massive stone. Digestive issues continued. Then, I found out I had a hernia because of the gb operation, weakend the muscle wall. The hernia op was a big one, then got an internal infection which cleared up with antibiotics.

Then the rashes started. Knees, shoulders, back, neck, behind the ears, butt. I itched all over and didn't know why. The rash was always preceded by an itch and I got to the point I hated scratching because I knew a rash would develop. Prescribed creams didn't do anything and my doctor stated it was an allergy. But to what???

I asked my doctor if I could be celiac, with the rashes and digestive issues. "You're hardly wasting away, so no." That was it. Throughout the years, I would give up certain foods regularly, because "it doesn't agree with me, it must be a sign getting old" Bread was one of those foods.

Back home in Canada since 2008:

I am now on tablets for high blood pressure.I am on prescribed iron pills (still low iron despite being on the supplement)I am on prescribed B12 pills for my B12 deficiency - normal levels now, but just at the low end of normal. I asked if I could go off these and was told that if I do, my levels will be too low again.

Began an exercise program, 1 hour per day plus no junk food and smaller portions - actually gained weight! I am overweight but not obese.

But in the past year, I started noticing so many other things that really scared me:

No Energy - I couldn't even wash dishes without resting and would have to rest between putting my socks on

Fatigue but not being able to sleep at night

Couldn't walk down the stairs anymore without experiencing excruciating pain in my knees (down the stairs one by one resting in between)

Forgetfulness was scaring me, and the first thing I think Alzheimers.

Numbing often on the left side of my face

Nightsweats and severe hotflashes, worse than when I first started menopause

Extreme blushing/flushing

Red cheeks all the time

Indigestion, reflux and heartburn intensified

A feeling of trembling, vibrating inside me

Right ankle pain that sometimes prevents walking - this also has gone into spasm where my toes start curling up and foot turns inwards, pain radiates up shin (massage eases it.)

Irritability that put strain on my marriage

Sometimes feeling like I can't swallow, have almost choked a few times!

There is so much more but I've gone on long enough!

Because I wasn't losing weight and didn't have diarrhea, I accepted it wasn't celiac disease and I attributed everything to menopause. But I feel it is more than that.

I went gluten-free for a month in November 2012, as a test for myself. I actually cried at how well I felt. But it was going to be a month before I could see my doctor, knowing I would have to do the gluten challenge for any tests she wanted done.

I went to my family doctor in early December, and presented to her why I would like to be tested for celiac disease. I had it all written down for her! She was quick to get on the bandwagon and ordered a lot of bloodwork, testing for lupus, arthritis, diabetes, vitamin deficiencies, cholesterol, liver, creatine, and celiac disease screening. I went back on gluten for 2 weeks and the blood test for celiac disease came back positive. Now I am waiting for my referrel for the endoscopy/biopsy. Oh, all other tests came back negative!

My doctor has put me back to gluten-free diet only because, in this part of Canada, it could take months for my appointment and she doesn't want me to suffer anymore than I have to. The good thing is with it being months away, I'll have a few months from the date my appointment is scheduled to when I actually go for the biopsy, so a few months for the challenge.

But after all these years of fear and suffering, there's finally a possible reason and I look so forward to feeling normal. I don't know if I've ever felt normal because everything associated to being glutened has been the norm for me! Thank you for reading and thank you for this wonderful site! Good day to all!